Health Information Exchange: Brave New Frontier or More Unfulfilled Promises?

It's clear that promoting HIE in many regions of the country will require an external push

The Gehr Center/Slow Medicine series "Disruptions or Distractions: A Critical Look at Healthcare Delivery Reform" unpacks the data behind healthcare delivery system interventions, highlighting well-intended reforms that have yet to achieve the impact many have assumed. The series is edited by Michael Hochman, MD, MPH, Rachael Bedard, MD, and Pieter Cohen, MD. This fourth installment describes how health information exchange between health systems has faltered. Links to all articles in the series are available on the Gehr Center and Updates in Slow Medicine websites.

In 1998, the California county of Santa Barbara embarked on a bold effort to facilitate the electronic exchange of health information between medical providers from different health systems, proposing the creation of an online data repository accessible to all clinicians in the community.

The initiative had intuitive appeal. By streamlining the transfer of health information, the program would enhance clinical care by providing clinicians with better information about their patients' previous medical experiences. This health information portal might also help reduce unnecessary or redundant testing, promote better integration of medical data for health monitoring and reporting, avoid wasted time faxing clinical documents back and forth, and even reduce the overall costs of medical care.

The project quickly garnered extensive support, including a $10 million investment from the California Health Care Foundation.

But shortly after entering the implementation phase, the project faltered. The technology enabling the extraction of electronic health information from multiple independent health systems was trickier than vendors had envisioned. Perhaps more importantly, health systems were willing to invest only limited time and effort to make the project work. Despite such early promise, the project was discontinued 8 years later.

Says Walter Sujansky, one of the principal consultants on the effort: "The benefits of [a health information exchange] didn't exceed the perceived cost or risks for participants."

Unfortunately, the experience is far from an anomaly. Now, almost 2 decades after the Santa Barbara effort began, only a minority of regions of the U.S. effectively facilitate electronic health information exchange (HIE) between health systems. According to a report from the Department of Health and Human Services, as of 2013, "only 14 percent of physicians shared patient information with any providers outside their organization."

Furthermore, data from 2014 shows that only four in 10 hospitals can send patient information to and from external systems via electronic messaging, and only a little more than half can retrieve requested patient health information from systems outside of their own organizations. Perhaps most disturbingly, even many health systems that can exchange health information electronically don't do so consistently.

With so much to gain, why has progress in implementing HIE been so slow?

To be sure, there are substantial technical barriers to effective HIE. In a recent article, Anish Mahajan, MD, MPH, who leads efforts in Los Angeles for promoting data exchange among safety-net patients, underscores these challenges. Specifically, he mentions the lack of interoperability of electronic health record (EHR) systems, as well as concerns related to privacy and data security from the external sharing of health data.

But according to Mahajan and many other experts, these technical barriers, while challenging, are all surmountable. Much more difficult are the political and financial roadblocks to effective HIE.

In a 2016 viewpoint article in the Journal of the American Medical Association, David Blumenthal, MD, former director of the Office of the National Coordinator for Health Information Technology, and a colleague explain why: "Health systems have not prioritized HIE because of its expense and the potential to lose patients ... [and] electronic health record vendors have been slow to facilitate exchange between electronic records or have charged excessive fees to support it because of their own business incentives."

Recognizing these challenges, policymakers have developed incentives to push data exchange forward. Most notably, in 2009, as part of the federal stimulus bill, Congress committed almost $600 million to fund regional HIE hubs around the nation. As of 2013, there were an estimated 280 regional HIE initiatives. But while a few of these efforts have proven to be resounding successes, even with these incentives, many regional HIE initiatives have floundered for many of the same reasons as the Santa Barbara program did.

The experience in Los Angeles offers another telling example. Shortly after passage of the stimulus bill, the County of Los Angeles convened a group of stakeholders to establish a non-profit entity eventually known as the Los Angeles Network for Enhanced Services (LANES) to coordinate HIE efforts for safety-net populations. But despite substantial financial investment and countless hours spent organizing the effort, the initiative has thus far only succeeded in enabling information exchange within the public hospital and clinic system; most safety-net clinicians remain disconnected.

Although many Los Angeles area hospitals and clinics have expressed an interest in participating in LANES, they have not invested the necessary resources to make the initiative work. Likewise, some community providers feel that LANES has yet to develop the necessary infrastructure to facilitate HIE, in part due to a lack of investment. The LANES leadership, for its part, acknowledges the slow pace of the effort, but still believes that meaningful information exchange in Los Angeles will soon be a reality.

"I'm not saying they're not getting things done on their end. But nothing has come of it on our end," said Martin Serota, MD, chief medical officer of a large community health center system in Los Angeles County.

While HIE throughout much of the nation has been stymied by political and financial barriers, some regions have found ways to make meaningful progress. Indiana, for example, operates one of the largest HIE systems in the country, known as the Indiana Health Information Exchange (IHIE). IHIE uses a web-based portal that allows physicians across 94 hospitals and clinics to share clinical data on some six million patients. In 2002, long before the federal incentives program was launched, several Indiana health systems and other key stakeholders voluntarily began providing data to a central database. Now, with support from the federal incentives program and other investments, IHIE has developed a sustainable model for supporting this central database by charging subscription fees to participating hospitals and community providers. In return, providers can access their patients' information from the database.

John Kansky, IHIE's president and CEO, attributes the system's success to "figuring out long ago that the keys to growth and sustainability are to produce value at reasonable prices, listen to your customers, and run like a business."

According to Serota, who himself was an early adopter of HIE in a former role, these experiences show that "those who want to exchange health information and can create the business case will make it happen."

Yet in so many regions of the country, this collective will "to make it happen" may not be present. It's clear that promoting HIE in many regions of the country will require an external push.

As for how best to do this, there are currently two camps of thinking: The first is that we need to promote a disruptive innovation offering a new approach. Indeed, even in 2009, with passage of the stimulus bill, many felt that a strategy of funding regional HIE hubs could never succeed. Instead, many experts proposed using the stimulus funding instead to create a universal health information superhighway that all providers in the nation would have access to. In essence, this would amount to the establishment of a universal EHR system accessible to all clinicians. While doctors and hospitals might still use their own system, they could at minimum create an interface with the universal health data highway in order to exchange data back and forth.

Although this concept might seem like a long shot in our doggedly entrepreneurial and individualistic society, the failure of the current approach to HIE has caused some to call for reconsideration of this idea.

Others have hoped that technology companies would develop disruptive alternatives to the traditional HIE approach. Perhaps the most promising such effort was the Google Health initiative, which aimed to create a personal EHR system that would enable each individual to own his or her health data. Patients with a Google Health record would not only have access to their own medical data but also could easily share their health record with any medical provider they encountered. But to the surprise of many, adoption of Google Health was anemic, and Google opted to sunset the effort in 2012. Though explanations vary widely for why Google Health and related products have been slow to take hold, one key driver has been that organized health systems have not made it easy for consumers to keep their personal health records updated. Instead, presumably motivated by proprietary interests, health systems have tried to channel patients into their own patient portal products, many of which are clunky and do not permit easy data exchange.

The other main camp of thinking about how to better promote HIE is that, rather than attempting to promote disruptive innovation, we should instead continue on the current path while imposing stronger regulations and incentives to push along HIE uptake. This is precisely what was recommended in an influential 2014 report from the Office of the National Coordinator for Health Information Technology. Specifically, the report recommended regulations to encourage or even mandate that EHR systems include "standard sockets" (technically referred to as Application Programming Interfaces, or APIs) enabling the electronic exchange of health data with external entities. Such reforms would ensure interoperability of all EHR systems. Sujansky refers to this approach as "radical incrementalism."

But even regulations mandating standard sockets for all EHR systems to enable external exchange of health data may be insufficient.

This is because, even if the technological barriers to HIE were overcome overnight, the approach proposed by the Office of the National Coordinator and other incrementalists would work only if health systems were committed to utilizing HIE. According to Robert Wachter, MD, author of The Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine's Computer Age, this would involve a substantial commitment to redesigning internal work flows so that clinicians could seamlessly access data from external sources via their internal EHR system.

"The biggest thing," Mahanti says, "is that we have to switch to a user-focused design. We have to focus on what the physician wants out of technology, and what the customers -- who are actually using the information -- want out of technology."

Yet no incentive system, or even mandate, can stronghold health systems into making the investments to ensure that HIE is easy to use and relevant on a day-to-day basis for clinicians and patients. Unless a disruptive innovation comes along, we will need to hope that, gradually, the cultural shift Mahanti and others allude to begins to take hold.

Kirsten Clodfelter is a freelance writer living in the Midwest. Michael Hochman, MD, MPH, is the director of the Gehr Family Center for Implementation Science at the Keck School of Medicine. He co-edits the "Disruptions or Distractions" series.

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